JCPSLP Vol 14 No 2 2012

how their experiences through illness and upheaval had strengthened their relationships, although it had been reportedly difficult at times. Laura summed up her connection to Steve simply when she expressed her feelings about him: Um, soul, soul mate. Similarly, Clive discussed his feelings and what benefits he saw there had been for their relationship, by saying: The stroke has probably strengthened our relationship … it’s probably brought us, as I said, closer together, and I’m now more aware of her. When asked about the meaning of intimacy, Maggie shared her feelings about her relationship and the loss that she and David have experienced since receiving the diagnosis of motor neuron disease (MND) and the subsequent changes they have experienced. Intimacy means for us basically everything we’ve lost because of [MND] pretty much isn’t it? So it is that closeness, it’s, it’s being able to communicate, it’s being able to touch, it’s being able to show facial expressions, and being able to be close to someone without any barriers. Intimacy also encompasses physical closeness, and for some of the couples this had also been impacted by the physical and communication difficulties. After 35 years of marriage, one of the biggest obstacles to intimacy for Janet and Clive was the physical separation that they had to overcome. Janet discussed how this changed intimacy for them: I knew it was going to be pretty tough but just try to talk to him about, for one thing, we were going to be sleeping in separate beds, and, I mean you can’t really, it’s not the same sleeping in a single bed and waking and having to cuddle where you have to make an effort to do those things … And so, sometimes we’d put our beds together so he could hold my hand, or rub my feet or whatever. Theme 5: Adaptation The theme of adaptation encompassed changing the method of expressing intimacy, AAC as a barrier to intimacy, and non-verbal communication. Adaptation included comments and discussions that centred on adapting communication methods in order to maintain effective and efficient communication, and also unsuccessful changes or difficulty with communication due to the inability to adapt. With the removal of natural speech as an option for communicating intimacy, couples have had to make changes to how they express themselves to each other. David explained how the adaptations had not taken away from their intimate communication: [We] just [express ourselves] differently … quality is still the same it’s just different way you put it across. In contrast, the need to change methods of communication had a negative impact on other couples’ intimacy, with the new methods not working sufficiently to replace natural speech. Deb talked about her experiences and how she felt her communication was still not adequate in some areas. She shared: There is a way of communicating with not using words and that’s missing in our sex life now, and I think that’s affected [Henry’s] sexual response cause [he’s] not getting messages from me that I’m having a really good time. For some of the couples, AAC systems and devices created barriers to intimacy and changed the dynamics of intimate communication in their relationship. For Henry the reduction of spontaneity in expressing a message played a big role in the fluidity of his communication with Deb:

For some couples, living with a communication disorder helped them prioritise other aspects of their lives and let them refocus on what they felt was truly important. For James, who had only recently begun his relationship with Hannah, his communication disorder and physical disabilities had given him time to re-evaluate his life and relationships; he commented: I never really talked with my girlfriends before the [accident]… completely different now … thought lots about life after my accident (especially during my 2 years in hospital), what I want from my girlfriend, what makes a relationship healthy – COMMUNICATION, listening, expressing feelings, MORE COMMUNICATION… life’s too short…more mature now, accident MAKES you grow up and think about life (what’s really necessary/important/essential)… Clive has also re-evaluated his life since his stroke and felt that: Physical things don’t seem so important. Like physical possessions. Making communication a priority and only discussing the things that were important and crucial came through in several interviews. For Steve, it was evident that Laura’s well-being and recovery have been his number one focus since her stroke 11 years ago. He reflected on the importance of this for him and his relationship with Laura, stating: She was my priority, I think I made my point pretty well clear and I always, always have … that’s what I was doing to filling in my time instead of being out in the garden and letting her stagnate in front of the TV, I was actually in there playing games, doing things, trying my best while the weeds were growing in the garden. Theme 3: Time The issue of time was identified as a significant concern for most partner participants. The theme of time incorporated time pressures and time-saving techniques employed to reduce effort for both partners. It also encompassed the need for special time to be put aside specifically for intimate communication and quality interactions that may not be have been possible otherwise. Some of the couples had made changes to the way they communicated in order to save time as Maggie explained: You know how there’s always that standard joke about married people and they finish each other’s sentences ... that really came into effect and we actually had to tell people this is what we’re doing and it’s ok to do that ... but it just saved a lot of time and hassle. For Hannah and James who communicated via email due to their long-distance relationship, time was very important and played a major role in the way they communicated, as Hannah explained: On weekends we have, we do more emailing sort of because we have more time … obviously because he, he’s slower at typing than me sometimes his responses aren’t as detailed as mine and sometimes he’ll, he’ll just start a conversation thread and then I’ll sort of put more detail in or whatever. Theme 4: Closeness The theme of closeness included the aspects of closeness and connection for couples, and physical closeness which had proved more difficult due to co-existing physical disabilities, but which was also seen by some as beneficial in developing the emotional connection in their relationship. For those couples who were in relationships before the onset of the communication disorder, most commented on

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JCPSLP Volume 14, Number 2 2012

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